My last post on Pseudo Progression introduced “immune related adverse events”(IRAE’s). My brief experience with IRAE’s follows.
I was on a roll with nearly boundless energy– beginning with a slight left-foot drag, motor nerve impairments piled-on and within days my left leg was paralyzed, and left arm weakened so that I cannot raise nor use it normally.
In the interval of ten days I have changed from feeling healthy, energetic, and optimistic to wheel-chair-bound and dependent on a caregiver for most adult tasks of daily living.
I had a conversation with my renter-model-wheelchair. I call him Mark, because he marks me with a small scrape or bruise whenever I try to rely on him for mobility. His edges are sharp, his seat is hard, and despite being the narrowest model available, he constantly leaves me stuck between here and there, this and that furniture or bound up in a corner.
Me– We have to talk Mark. I am not happy in our relationship. I think you probably already know where this is going… I want a divorce.
Mark–It’s not my fault that your house is not accessible.You can’t just put me out on the street. You have no idea what happens to abandoned wheel chairs! Also I was told you had two strong arms. I really need to be with a two-armed person.
Me–Please be gone next week. It’s not your fault that this house is not your kind of place– enabled for ADA and that my two strong arms lasted only the first day. I wish you luck finding a compatible match next time around.
Here I am persisting with my care team, balancing treatment with palliative care and learning new coping skills with a lot of help.
Leaving prognostications, promises and prognoses hanging for now. See me still here, redesigning a life tomorrow.